Tag: End of Life Care

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A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

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Diagnosed With Dementia, She Documented Her Wishes.

They Said No.

Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. She wears a chain bearing instructions that she not be resuscitated.

By JoNel Aleccia

When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.

Today, she struggles to remember multiplication tables.

Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.

In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.

“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”

But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.

In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.

There’s no provision, the letter said, for “decisions to refuse food and water.”

It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.

“It is, in my opinion, a false sense of security,” Terman said.

That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.

“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”

One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.

It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.

Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.

Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.

He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.

“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.

The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.

One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.

“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”

Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.

In addition to Gaster’s document, directives drafted in New York and Washington state have drawn hundreds of users. The aid-in-dying advocacy group Compassion & Choices released a dementia directive this month.

As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.

“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.

Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.

“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.

Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.

In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.

Frontotemporal dementia affects about 60,000 people in the U.S., and patients often die within seven to 13 years, but Saran’s disease appears to be progressing more slowly than expected.

“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.

She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.

When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.

“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”

She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.

“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”

Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.

“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”

Saran said no one from Kendal has reached out to discuss an “alternative path.”

Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.

Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.

The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”

“There’s still a very wide perspective of viewpoints on that,” he said.

Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.

The controversy centers on the definition of those terms.

Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”

It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.

“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”

The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and  British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.

Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.

Saran has considered that, too.

“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”

But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.

“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”

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Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

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“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.

“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”

That’s exactly what happened with Teno’s mother.

“While it was difficult for me to witness, I knew what to do,” she says.

In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.

Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”

For many families, making hospice work at home means hiring extra help.

‘I guess I’ve just accepted what’s available’

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.

“If you don’t, she will just spit them out,” Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.


John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.

When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.

But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”

Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.

Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.

“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”

Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

‘It’s a burden I lovingly did’

“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.


Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.

“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”

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Cannabis in Palliative Care

Dying with dignity is a human right, and cannabis could help

By Mary Biles

End-of-life care is one of the less frequently discussed uses of medical cannabis. After all, most of us who turn to cannabis, want to continue living, right? And yet, thanks to the ability of cannabis to ameliorate the heavy symptom burden experienced by patients with minimal side effects, palliative care is perhaps the area of medicine that would most benefit from its clinical use.

Dying is a journey all of us will inevitably take, however how to ‘die well’ is something we tend not to consider. Dignity with dying is only possible, I believe, when there is a certain amount of consciousness and acceptance of the process. Something that a skinful of morphine doesn’t allow. But cannabis does, and I experienced this for the first time with a friend’s mother.

As Jose neared the end of her life after battling pancreatic cancer, morphine failed to control her pain, leaving her confused and unable to connect with loved ones. Thanks to an open-minded doctor who recommended cannabis oil, the last few weeks of her life became the gift her family longed for. The pain no longer troubled her, the anxiety lessened, sleep returned, as did her appetite. Not only that, Jose remained fully lucid until moments before she died.

This changed me forever and it’s why I’m sitting here today writing about cannabis.

Holistic medicine

Sadly, when my mother became terminally ill with advanced cancer, this option was not available in the UK. Sure, I had a few offers from my cannabis contacts. But for an 82-year-old Irish ex-nurse, trusting a funky tasting oil (that I couldn’t say for sure how much to take) over the pharmaceutical meds prescribed in precise dosages was never going to happen.

Instead, I found myself administering a list of medications that just kept growing and growing as the disease progressed. This included morphine for the pain (which incidentally my mum couldn’t tolerate), antiemetics for nausea, laxatives for the constipation caused by both the cancer and the pain medication, as well as Lorazepam for the middle-of-the-night agitation.

The frustration was overwhelming. I knew that instead of the sledgehammer approach to her symptom control, a far more holistic, person-centred alternative existed that could not only ease her pain, take the edge off her anxiety and agitation, stimulate her appetite and help with the nausea, but also allow her to be present for the time that remained.

What is Palliative Care?

According to the World Health Organization, palliative care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

In other words, palliative care encompasses end-of-life care, but a patient receiving palliative care is not necessarily approaching death.

However, when a patient enters the end-of-life stage in a hospice setting, the emphasis on quality of life means rules often get bent in a bid to fulfil a dying patient’s wishes and beliefs. Dogs and family pets are welcome guests in a patient’s room, and a glass of wine is not unheard of, if that’s what the patient wants. So why not allow access to medical cannabis if that will help ease the suffering of a dying patient?

In some countries and states in the US, palliative and end-of-life care is considered a qualifying condition for the prescription of medical cannabis.

Using Cannabis in Palliative Care

Since 2007, the Israeli Ministry of Health has approved medical cannabis for palliative care in patients with cancer. This led to a prospective study analysing the safety and efficacy of cannabis in 2970 patients and the responses were overwhelmingly positive.

Ninety-six percent of patients who responded in the 6 month follow-up reported an improvement in their condition, 3.7% reported no change and 0.3% reported deterioration in their medical condition. Furthermore, while only 18.7% of patients described themselves as having good quality of life prior to cannabis treatment, 69.5% did six months later. Tellingly, just over a third of patients stopped using opioid pain medication.

While observational studies such as these suggest cannabis can improve symptoms commonly found in advanced cancer, as well as improving quality of life, in practice physicians often feel insufficiently informed to prescribe cannabis to their patients.

A 2018 survey found that of the 237 US oncologists interviewed, 80% conducted discussions with their patients about cannabis, while only 30% actually felt they had enough information.

 

However, an encouraging 67% viewed cannabis as a helpful additional way to manage pain, and 65% said that it was equally or more effective than the standard treatments for the rapid weight loss often found in advanced cancer. And yet, only 45% of them actually prescribed cannabis to their patients.

These discrepancies mean that even in countries where cannabis can legally be prescribed for palliative care, many physicians prefer to stick to the usual methods of symptom control.

A Physician’s View

Claude Cyr, MD, a Canadian family physician and author of “Cannabis in palliative care: current challenges and practical recommendations,” believes palliative care is uniquely suited to cannabis.

 

“If we’re going to integrate cannabis products in medicine,” he told Project CBD, “palliative care is the best port of entry because of the fact that doctors have more time, and patients also have the time to deal with possible issues of the medication.”

However, in order for cannabis to fulfil its potential in palliative care, Dr. Cyr believes a shift in how physicians view symptom control is needed.

“What seems to be coming through with the research for symptom control,” says Cyr, “is that cannabis is mildly effective for pain, mildly effective for nausea, mildly effective for insomnia and anxiety. It doesn’t treat any one of these conditions dramatically better than the other medications that we have. So, many physicians are like ‘why would we take a medication that is mildly effective when I can take a much more incisive approach with specific symptoms.’ Instead of saying ‘Do you have a bit of pain, a bit of anxiety, a bit of insomnia, a lack of appetite and a bit of nausea? So why don’t we start with something that’s mildly effective for all that and then we’ll be able to work on more specific symptoms in the long run’.”

Cyr is also critical of fellow physicians’ tendencies to rely on clinical evidence while dismissing the validity of their patients’ positive experiences.

“Palliative care is a specific situation where we can actually put into question the core philosophy of medicine which is the evidence based paradigm. I think physicians need to stop obsessing over the evidence when their patients are dying and clearly telling them, ‘I’m really enjoying this, I’m getting huge benefits from this, I’m sleeping better, I’m eating better.’ But the physicians are nodding their heads and saying, ‘I hear you, but I can’t accept this because I’m still lacking evidence.’

“But I think there is enough data out there to convince physicians that it’s safe for palliative care patients, and it’s predictable.” 

Psychoactivity in palliative care

Cyr urges doctors to find peace with the idea that cannabis is psychoactive, which he believes could actually help patients process the existential anxiety often experienced at the end of their lives.

“When you look at the studies of psychedelics in depression and existential anxiety in cancer patients, some of these results have been dramatic,” says Cyr. “Although cannabis isn’t a true psychedelic, there are some similar experiences that patients tell us about.

At smaller doses patients experience a psycholytic effect, a lowering of the defenses allowing people to explore other aspects of their psyche, and that’s when they start making connections between different aspects of their reality.”

THC’s ability to reduce activation of the default mode network, the area of the brain involved in cognitive processing and where our ego or sense of self is thought to reside, could also potentially bring a sense of peace to dying patients.

Cyr explains: “Existential anxiety is rooted in the loss of the self, but when you can dissolve the ego temporarily and you realize it’s not all about me, that can be liberating.”

For the last fifty years, activists have been campaigning for the right to use cannabis to treat their health conditions in order to be well. This must also be extended to using cannabis to maintain quality of life in life-threatening illnesses, and when this no longer becomes possible, to die well and with dignity.

In memory of Jose and Agnes.

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My 92-Year-Old Father Didn’t Need More Medical Care

Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.

By Ezekiel J. Emanuel

My 92-year-old father fell one Saturday night a few months ago. My mother could not pick him up. Her brother was not answering his cellphone, so she called 911. An ambulance crew brought him to the hospital.

The emergency-room physician ordered a CT scan. A spot on the scan worried him, so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of his brain. Meanwhile, a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital.

I took the first flight from Washington, D.C., and arrived in his room at a suburban-Chicago hospital at about 9 a.m. He was sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.’s. Still, my father was acting like himself. When I entered the room, he mischievously needled me: “How are you doing, schmucko?”

The monitor above his bed showed a regular heart rate and oxygen saturation of 100 percent. The IV pole towering over him showed two empty bags of antibiotics.

I squeezed my dad’s hand, and we talked for about 20 minutes. Then I stepped out of the room to find the doctor to ask some questions. Standing at the nurses’ station, I was introduced to a neurosurgeon and a neuro-oncologist, who were ready to talk to me about my father’s condition and treatment options.

My father had a large brain tumor that could not be cured and would end his life. No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life. We didn’t want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left.

But no one had taken the time to ask him about his wishes regarding medical treatment, even though he was competent to make decisions and was himself a physician. No one asked my mother and brother, who were with him in the emergency room and at the hospital, if he had an advance-care directive or wanted to have a do-not-resuscitate order. My father, a pediatrician, was one of those doctors who hated getting any medical care. Fifteen years before, he had walked around for three weeks insisting that the pain at the bottom of his rib cage was just acid indigestion. Eventually, he consented to go to his internist and was diagnosed with a heart attack, which required a bypass operation. Everything about the way he’d lived meant he certainly did not want any brain surgery with no chance of a cure. He wanted to die at home having shared his final days with his family.

Since the mid-1980s, I have worked to make this type of end-of-life care possible. I am a physician too. Once my father was admitted to a hospital, it took all my expertise and experience to arrange the kind of care he needed—and prevent the medical system from taking over and prescribing unnecessary interventions.

It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.

It was easy for the physician to prescribe my father two antibiotics for his supposed pneumonia even though he had none of the symptoms—a fever, ugly-looking phlegm, shortness of breath. Indeed, he was comfortably breathing room air with 100 percent oxygen saturation, which people with pneumonia typically can’t do. But it was impossible for the physician to order an in-home aide to help my father shower, get to and from the bathroom, and navigate the stairs to the living room and kitchen.

It was easy for my mother to call 911 and have him transported to the hospital. But if he fell again, there would be no 911-like number for my mother to call for urgent assistance short of EMTs and ambulances.

It would be easy for the emergency-room physician to admit my father again, and even put him in the intensive-care unit. But no one suggested that he and my mother get mental health care or see a grief counselor to cope with his new terminal diagnosis.

The hospital was no place for my father to spend his last days. To thwart the medical system’s momentum to lard on ever more costly, unnecessary, and unwanted interventions—and to convince the medical staff we were serious about no—I took my father’s oxygen monitor off his finger, disconnected his cardiac monitor, insisted that the nurse remove his IV, and asked the physician to discharge him as soon as possible.

Beyond a suggestion that we find a home-care agency to call, the hospital offered no assistance in getting him help at home. Ironically, the aide transporting him out of the hospital volunteered that she knew someone who was available to provide home care. Through my father’s former nurse and someone she knew, we ended up getting a talented and kind set of cousins—immigrants from the Philippines—who were able to provide care.

Despite the medical system, my father did avoid further trips to the hospital, an ICU admission, and more antibiotics and machines. He spent the rest of his time at home and was able to say goodbye to everyone. And being at home was cheaper. We still don’t have all the bills, but the tab just for about 12 hours in the hospital came to $19,276.83. In contrast, the more than 200 hours of home care he got over the next 10 days cost only $6,093.

Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them. My father’s story is the answer.

It has less to do with physicians’ and hospitals’ financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care. For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family. Until the system takes account of the whole patient and provides the whole package of humane care as the default—so that it’s routine and made available 24/7 with one physician’s order, just as chemotherapy or an MRI would be—Americans will not be able to finally change end-of-life care and reduce those costs.

A terminal diagnosis is inherently traumatic for patients and their families. My father’s experience at home before his death needs to become the standard of care. And not just for patients with pushy sons who have medical training and know how to speak with physicians, disconnect cardiac monitors, and firmly refuse the interventions that our health-care system is so predisposed to offer.

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Dying in the Neurosurgical I.C.U.

In cases of brain death or neurologically devastating injury, poor communication can make painful situations even harder.

By Joseph Stern, M.D.

The bullet hole in the teenager’s forehead was so small, it belied the damage already done to his brain. The injury was fatal. We knew this the moment he arrived in the emergency room. Days later, his body was being kept alive in the intensive care unit despite an exam showing that he was brain-dead and no blood was flowing to his brain. Eventually, all his organs failed and his heart stopped beating.

But the nurses continued to care for the boy and his family, knowing he was already dead but trying to help the family members with the agonizing process of accepting his death.

This scenario occurs all too frequently in the neurosurgical I.C.U. Doctors often delay the withdrawal of life-sustaining supports such as ventilators and IV drips, and nurses continue these treatments — adhering to protocols, yet feeling internal conflict. A lack of consensus or communication among doctors, nurses and families often makes these situations more difficult for all involved.

Brain death is stark and final. When the patient’s brain function has ceased, bodily death inevitably follows, no matter what we do. Continued interventions, painful as they may be, are necessarily of limited duration. We can keep a brain-dead patient’s body alive for a few days at the most before his heart stops for good.

Trickier and much more common is the middle ground of a neurologically devastating injury without brain death. Here, decisions can be more difficult, and electing to continue or to withdraw treatment much more problematic. Inconsistent communication and support between medical staff members and families plays a role. A new field, neuropalliative care, seeks to focus “on outcomes important to patients and families” and “to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.”

Not long ago, my surgical partner performed late-night emergency surgery on a young woman who had also been shot in the head. This time, the bullet’s violent impact exploded her skull. It traversed both hemispheres of her brain, including her basal ganglia and thalamus (deep brain regions affecting consciousness). Injury to these areas has a dismal prognosis, as do penetrating injuries to both sides of the brain. But, unlike the first patient with a single bullet hole and no exit wound, the initial explosion decompressed her brain, accommodating swelling rather than producing dangerously high pressures as occurred in the first patient, which led to brain herniation and his death.

This young woman lay in her I.C.U. bed, breathing with the aid of a mechanical ventilator, turned by nurses every two hours, fed through a thin tube passed through her nose into her stomach: never conscious, never moving spontaneously, seemingly unaware of her surroundings. She was likely to remain this way for the rest of her life.

The treating physicians and nurses agreed on the patient’s prognosis, and on a consistent message everyone could support. We met with the family at the young woman’s bedside and later telephoned out-of-state family members. The I.C.U. director and I spoke about difficult medical decisions we’d had to make regarding our own family members, and we asked them what she might want, since they were representing her interests and acting on her behalf. I explained her injury and the likelihood that she would never recover: Together, family members and neuro-I.C.U. caregivers agreed to transition the woman to comfort care and let her die.

Two years ago, I too was on the family side of this situation after my brother-in-law Pat collapsed with a brain hemorrhage from a ruptured cerebral aneurysm. As the only physician in the family and Pat’s legally designated health care power of attorney, I made his medical decisions and communicated with the rest of his family, including his two sons, who were then 16 and 18 years old. This was all the more difficult because a year previously, his wife, my sister Victoria, had died of leukemia, leaving Pat as their children’s sole caregiver.

Pat was taken by ambulance to U.C.L.A. Medical Center in Westwood. Before flying to Los Angeles, I agreed to surgical clipping of his ruptured aneurysm. Technically, surgery went well, but Pat never regained consciousness. While never brain-dead, he remained deeply comatose. His neurosurgeon, Gregory Lekovic, was supportive: he and I discussed a timeline at our first meeting. He recommended giving Pat at least a week to improve. If he did not, Dr. Lekovic counseled us not to allow a tracheostomy and G-tube placement (permanent surgical routes for breathing and nutrition), and opt instead to withdraw treatment. This would be the clear stopping point. Dr. Lekovic and I worried it would be difficult to back off after those procedures had occurred.

Throughout the following week, Pat did not improve at all neurologically. Everyone hoped he was rallying. I felt like a wet blanket, continually challenging the other doctors’ enthusiasm. Understanding his condition and having legal authority to make decisions allowed me to keep a clear view of care objectives, but it didn’t make the situation easier on a personal level. Pat’s children had only begun coming to terms with losing their mother and were now confronting the possible loss of their father. But delaying this loss wouldn’t justify his continued existence without quality of life. He would have hated being comatose or severely impaired in a nursing home, unable to relate to his family or to care for his own basic needs such as eating or toileting, and had feared burdening his family.

The likelihood was that Pat would never regain consciousness. Yet on the morning we had planned to withdraw treatment, one of the neuro-I.C.U. specialists presented a scenario in which Pat might wake up, become able to walk with assistance and participate with his family. When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome.

Then Dr. Lekovic, speaking plainly, told us that for himself or his family member, he would make the decision to end treatment. He seemed genuinely sad. Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty. In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.

My nephews appreciated the truth when I explained their father’s prognosis. While they were devastated at the prospect of losing him, honesty and inclusion in decision-making were important in helping them move forward with their lives.

Even with my training, I wondered if I was making the right decisions. Each affected family faces similar burdens. We all need better help wrestling with decisions in neurologically devastated patients, both through improved communication and the development of neuropalliative services.

Those of us in the medical profession cannot allow ourselves to focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life. We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.

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The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

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